Paulo Gonçalves

Paulo Gonçalves, 56 years old, two extraordinary children. Studied Applied Mathematics and Computer Science, practiced technology consulting and business transformation for about 30 years. Was diagnosed with Secondary Progressive Multiple Sclerosis at age 40. With two children to give an example to, entered a recovery process which took more than 150 weeks, 3 times a week, 1 hour per session. Regained the walk and self-confidence that allowed him to say in 2028 when he turned 50 that “ if his decade of forties had been the best so far, the fifties would be even better”. He never imagined that it would be in the advocacy of people living with chronic illnesses or rare diseases. He is Chairman of the Supervisory Board of Plataforma Saúde em Diálogo, Vice-President of the board of the Portuguese Society of Multiple Sclerosis and President of RD-Portugal, Union of Associations for Rare Diseases of Portugal, since its foundation in May 2021, the federation that unites 45 Rare Diseases Associations. Represents Portugal in the EURORDIS Council of National Alliances, is member of the National Mirror Group for the new European Partnership for Rare Diseases (replaces the EJPRD), represents rare diseases patients in PT_Med_Gen (the working group for the National Strategy for Genomic Medicine) and represents RD-Portugal in the Nacional Intersectoral Plan for Rare Diseases. He has a special interest in personal data security and the use of data for the evolution of science towards better answers for people living with illness never neglecting the sustainability of Health Systems.